First FFC visit-Dallas, TX

Discussion in 'Fibromyalgia Main Forum' started by browneyes259, Oct 10, 2005.

  1. browneyes259

    browneyes259 New Member

    Hey all!

    Sorry it took me so long to post about my day at the Dallas FFC.

    Everything went wonderfully. I was one of the fortunate & after my visit immediately noticed a difference in my pain and fatigue levels. They aren't humongous(sp?) differences, but it was enough to give me a taste of what life used to be & it gave me HOPE! Hope for the first time in many, many years. That to me is priceless.

    A good thing too since the treatment isn't cheap....LOL!
    But like I told my husband, I don't know how, but we'll figure the $$ out because I want my life back! My goal for the night should not be making it home and onto the couch(w/ my massage mat) for the night. I'm only 27!

    My doctor was Dr.Spurlock and he was very nice. Went over my whole questionaire and did a mini physical exam(checked trigger points, thyroid, reflexes, etc.). All told he spent a full hour w/ me.

    Just going by the symptoms I presented with (w/o getting the bloodwork tests back) Dr. Spurlock told me I have hypothyroidism (w/ enlarged thyroid) even though my PCP checks my thyroid every time I go and never bothered to say a thing about it. To be honest, I told Dr. Spurlock that I thought my neck had just gotten fat from all the weight that I've gained over the past 5 years (75 lbs.). He also dx'd me with pituitary dysfunction, adrenal insufficiency, ovarian dysfunction, CFS(1st x officially dx'd) & he reconfirmed my FMS.

    I then had 24, yes 24, vials of blood drawn for testing. At least I was fortunate they didn't have to use both arms like they have with some. Dr. Spurlock told me the costs of the testing will be about $3500. Whew! So glad at least the lab work is covered by my insurance or it wouldn't have even been feasible. As it is I am trying to get my ins to covered this treatment as in-network, instead of out-of-network.

    I figure, and was advised by a friend who used to pay and deny this type of in/out of network stuff, why should I be penalized for being sick and having to pay out-of-network rates because they(ins co) don't offer me an in network option for this DD. Cross your fingers and toes for a positive outcome there. Anyway, enough rattleing on about that.

    After I had my bloodwork drawn I went in to get hooked up to my IV. FYI, I am hypoglycemic and ended up not getting any juice or food in quickly enough, because I felt ok. Well, it hit me hard a few minutes later so just make sure you grab a juice and something to eat right away. They supply all kinds of drinks & snacks, and also music, blankets and comfy recliners to relax in. Very nice setup.

    It took them a long time to get a vein set up due to the fact that I had to fast for the bloodwork. Just an FYI to anyone with an upcoming appt., drink tons of water even though you can't eat, as much as you can. They said I hadn't drank enough so my veins were harder to hit.

    BTW, anyone else get the IV that tasted like creamed corn...LOL!! You actually taste it going in. They told me it was from the back pain med they added to my bag. Seems silly! My IV took a while because I had a lot of cramping in my arm so they had to slow it down. But they ice and/or cold pack the area to help with the cramping.

    The only bad effect I had from the day was a bad headache for a couple of days which the LVN & RN both said is common after the Nutritional/Pain IV that I had. Also have had a lot of pain in both arms. But I imagine that is from all the "work" they had to do trying to get a line set up for the iv.

    I haven't had enough energy to type extensive info., until today, about my visit. I have also been having trouble with my tendonitis in both thumbs again, so typing is interesting and takes forever.

    I also have a few ??'s for those of you that have been going to the FFC centers longer than I have.

    Do any of you have any hints/tips on keeping your meds/supps straight. I was already on a lot of percription meds, now I've added two more scripts and 5 more supplements. Some get taken w/ food some w/o. Some are am....some are pm. Some are taken 3 hrs after a meal, but not w/ dairy. Help!!

    I am already foggy enough as it is. I'm afraid I'm gonna knock myself off on accident taking the wrong thing at the wrong time w/ the wrong food (LOL!). It took me an hour yesterday to set up my pill strips for a two week period. Aaaahhhhhh!

    Also, do any of you use a reminder system for your sfternoon meds. Never took anything that wasn't morning or night and can't seem to remember them well.

    Thanks to all of you for encouraging me through this first appt. It was hard emotionally and financially, but sssssooooo worth it. I am excited about my health for the first time in many years.

    I hope this can be an encouragment to others coming behind me. If anyone has any ?'s I'll be happy to answer whatever I can!

    Gentle Hugs,
    Jen


  2. MKlady

    MKlady New Member

    Glad you had a good experience. I go to FFC Las Vegas and they've been great!

    To help with the Rx and supplement schedule, I have a spread sheet that lists the times of day across the top and spaces for the meds down each column. I put the pills I'm supposed to take under the times I'm supposed to take them and post it on my fridge. Then I write the dosage on the bottle in marker pen. Seems to keep most of it straight. I'm taking 16 supplements and Rx.

    You could make a daily copy of the sheet and then check off as you take them. I've thought about it on my really foggy days.

    I have the most trouble with the ones I have to take 30 mins befor meals. How often do I know I'm going to eat my lunch (particularly) and dinner (often) 30 minutes ahead of time? So I end up having to wait to eat.

  3. Jgavi

    Jgavi New Member

    Glad the FFC is a good one!

    Can you tell me which one you go to?

    My friend is going to lose her Dr soon and is looking for a new place to go to, she lives in ft worth but will drive to dallas....

    thanks!

    jgavi
  4. rileyearl

    rileyearl New Member

    I'm so glad you had a positive experience. I will be going to my 3rd FFC appt in Seattle on Wed.

    The pill thing is a challenge. If your course is anything like mine, the supplements you got will help with the fog and boost your energy. Pain, well, that's another story.

    I keep my supplements in the kitchen and the scripts in my pill box in the bathroom. Luckily, the only off time one I have is to be taken right before bed. I tried setting an alarm for the afternoon group, but either slept through it or ignored it. I have restless legs and if I don't take my Mirapex early enough, my legs start kicking. That's a pretty good reminder.

    Hope you have a great week!

    Francie
  5. LISALOO

    LISALOO New Member

    I have my third consulation by phone today (Cleveland Clinic). I'm 27 too, feel too young for this! Hoping they will help.


    I also have a spreadsheet for my medicines. I also have one of those big pill dividers for the week. It has four dividers, breakfast, lunch, dinner, night. So I only fill it once a week. Helps a lot, but I feel like an old lady!!!
  6. rlh1961

    rlh1961 New Member

    Jen, I'm so glad you had a good experiencing there! I've wanted to go since it opened (I'm in Oklahoma City), but don't have the $$. I think ins companies should cover this, too; not just the lab work. I'm particularly interested in your thyroid and pituitary gland dx. I've had trouble with my thyroid, too. A friend of mine who has rheumatoid arthritis had to have two surgeries on the pituitary gland, and take meds for the thyroid. I have tons of weight on me, and I don't eat much. I gained 23 pounds in a matter of a couple of months, then since February of this year I've only gained one pound, yet my clothes don't fit (just in the past three weeks), and I feel bloated and off balance. I was dxd with fibro/CFS a couple of years ago. Last week I got the dx on rheumatoid arthritis, and possibly Lupus, too. I used to go to an internist in Tulsa who actually has fibro, and treats patients with FMS/CFS and auto immune problems. But, I can't drive there, and I've not been happy with the clinic either. I've been so frustrated over my fatigue and pain for over three years now. Haven't been able to work since 7/9/02 and am on social security disability and medicare. Again, I'm glad you went, and I wish you very good luck with your meds and supps. I think it looks like a great program there, and I've heard many success stories.
    God Bless,
    Roberta
  7. Jen102

    Jen102 New Member

    do you recall what is all in them?

    I have a watch with 5 alarms on it to help me remember when to take meds. It is the only way i would remember. Jen102
  8. Sandyz

    Sandyz New Member

    I`m glad you had such a good experience. I go to Dr. Spurlock at Dallas too. He is wonderful. That creamed corn taste is horrible, I tryed to stay away from people that day I got it because sometimes people smell it on you.

    ITs very hard to try to remember to take all that with our brain fog. I got a weekly pill divider box. I also, wrote on my supplement bottles how many and how many times a day I am supposed to take each one.

    Keep us updated how you are doing.
  9. browneyes259

    browneyes259 New Member

    MKlady-thanks to you and others who suggested the spreadsheet idea. I think that would be a fantastic solution to my problem.

    Right now I am taking 5 supps and 9 scripts and I haven't gotten my blood work back yet. I hate taking pills and it seems like a general conspiracy to make supplements as big and stinky as possible...anyone relate there.....lol....

    But it's worth a hundred a day if it will get me better. Also once they get everything in your system straightened out they get you down to as few as possible.

    JGavi-I go to the FFc in Dallas (about a hours drive, so not too bad) Ft Worth would be 1 1/2 hours so not a huge difference. There are FFC centers in Dallas, Austin, Fort Worth & Houston so they are spread out a bit. Hope your friend can get hooked up with a center near her.

    Francie-Thanks for the tips.....I guess I'll have to ask my husband, because unfortuneatley (sp) he is the one who takes the brunt of my kicking! :):)

    rlh1961-Hope that you find help where ever you can get it....praying soon you will find a way to get some relief.

    Jen102- I got the Standard Nutritional IV to which they added a Back & Muscle IV(which is the creamed corn culprit). The standard iv has magnesium, calcium, ascorbic acid(vit C), vit B6, vit B12, AMP, procaine, //thiamin, riboflavin, niacinamide, dexapanthanol, Pyrodoxidine sodium bicarbonate// five for reducing acidity, acetyl-L-carnitine & glutathione. The Back& Muscle iv had lidocaine (sweet!), DMSO(dimethyl sulfoxide, colchicine.

    For me personally I felt a slight improvement immediately and I am still feeling a little better than normal.

    Sandyz-yeah, when Dr. Spurlock asked me if I wanted the Back/Muscle IV I said yes. Then he was like, "oh, btw, you will taste and smell like creamed corn." It tasted really gross while the iv was going in, but they had mints(you know that though). I checked with my hubby and a couple of very close friends/co-workers the following two days and no one could smell anything. Co-worker's said all I had done was give them ammunition to tease me. I told them I just couldn't keep something so weird/goofy tomyself!

    Thanks for taking time out of your days to offer advice everyone!! Off to bed for sleep (maybe! :))!

    Hugs,
    Jen



  10. Jen102

    Jen102 New Member

    what's in the IV. Jen102
  11. ldbgcoleman

    ldbgcoleman New Member

    Brown Eyes

    Good going girl hopefully you are on the right road!

    I put all my meds on one shelf. I write on each bottle wit a sharpie how many and D for day N for night. When I take the meds I pull everything off the shelf and take out the pills and put the bottle back. After while it is nott so overwhelming. The only thing I don't keep on the shelf is my sleep med and thyroid. Thiose are in my bathroom and I take them right befroe bed.

    I am to computer illiterate for a spread sheet! I have also now started to take my morning stuff out at night and put them in a cup so I can save time in the AM.

    Take Care and good Luck!!! Lynn
  12. browneyes259

    browneyes259 New Member

    ....I too am completely hopeless with computers! Fortunatley I have convinced my sweet hubby to set it up for me.

    Hugs,
    Jen